HOW MY CHILDREN’S DISABILITIES CHANGED OUR LIVES

HEALTH, MOTHERHOOD, PREGNANCY, BIRTH & BABY'S, THOUGHT-PROVOKING

Sometimes a list really gets hold of you and this one by Katherine Kowalski, is one of them. It’s an honest, insightful reflection on how her experience of Motherhood has lead to somewhat of a personal metamorphosis.

Though full of challenges it has given her huge strength and opened her eyes wide to the complexities, fragility and beauty of what it is to be human.

———————————————————————–

I stumbled into motherhood. My first baby was a surprise. I never planned for the type of mother I wanted to be, and I hadn’t given any thought to what life would be like if a child of mine was born with a health problem or a disability.
Drifting along in an Ina May Gaskin inspired joy-cloud, I expected and planned for a blissful home birth. The brutal reality was a high-risk hospital delivery that my baby was lucky to survive. An APGAR of 1 is enough to put real fear into even the most seasoned obstetricians and neonatologists, I learned.
But she blossomed, and life with her was ’normal’. Bugaboo, cappuccino, bone-weary, London park, milky, NCT-style ‘normal’. It seemed that’s what everyone was doing, and I couldn’t imagine my motherhood any other way. Privileged and comfortable was all I had known in my adult life.
It was when the mood of the day switched gear to ‘are you thinking about another one yet?’, that my very normal life changed tracks.
I never imagined having to terminate a pregnancy for medical reasons. Perhaps, in those shoes again, knowing what I know now, I would make a different choice. I’ll never know my second baby, the person they would have become, their abilities, their disabilities.
I never had a chance to say goodbye. My womb, vacuumed dry of fear, a new seed of guilt planted in its place. I had touched the edge of life with disability in it, and recoiled, through nothing more than my own ignorance and fear.
I am not a religious person but maybe I do believe in fate.
So what followed didn’t feel misplaced.
A miscarriage, and then a healthy, normal pregnancy. My next child, a little boy, arrived in the world with another crash delivery. With an APGAR of 10 I should have felt reassured. I didn’t. Looking into his purple scrunched up newborn face, I felt love. But also I felt fear. Something I couldn’t yet pinpoint was ‘different’.
Mother’s instinct, possibly. A full body brace, guard up, listening, watching, waiting for something to happen.
Scrawled in black biro in my maternity notes, the midwife had written ‘mum seems very anxious’, but she did neither reassure nor soothe. A furrowed brow in the corner of the room, long-awaiting the end of her shift.
The post-natal ward paediatrician examined every inch of my baby’s delicate body, with searching intensity in her eyes. I knew why. And so did she. But not a single word was exchanged and she sent us on our way. Discharged. Maybe my fear was a bum-steer? A stale leftover from earlier heartache.

He fed. He slept. Oh he slept! Gloriously alarming, quiet newborn days. A paradox of open relief and secret terror. My family does not have quiet, biddable babies.
By six weeks, Dr Google had told me my son had cerebral palsy. The stiff banana pose on being lifted. Eyes and head to the right, stuck on repeat. Miniature fisted hands, not batting at toys on the playmat. High-pitched, feeble cat cries. Sharp intakes of breath and beads of sweat on the forehead while feeding. Sleeping. Too much?
But feeding and putting on weight were the only tick-boxes on the list at the baby clinic. Which he was. So nobody ‘professional’ questioned his wellbeing.
Maybe I was imagining what I thought I saw? I was an ‘anxious mum’ after all. My maternity notes, written by a woman who had known me less than two hours, told every health professional such.
There was no dramatic ‘diagnosis day’ for us. With health visitors seemingly uninterested in his condition, ‘He’s feeding and putting on weight isn’t he?’, we floundered.
Privately, we sought help, hoping for reassurance, a leg-up back onto the beaten path of everyday parenthood.
None came.
Instead, a shuddering shift, slipping further down a cliff face we had no idea how to navigate safely. Descending, alone, from the world we knew, into one we didn’t.
‘We’re really worried about what we’re seeing here. Have you heard of dysmorphic features?’ the osteopath quizzed, tentatively, one arm ominously draped around my shoulder.
‘This is the worst case of torticollis I’ve ever seen. Oh, and that eye movement, do you think he might be having little seizures?’ offered up the private children’s physio, after a session that had brought her quietly to tears.
‘I can’t get a reading. We don’t like that,’ the audiologist announced to the ground in front of her.
‘You need to get him referred for NHS neurological and genetic testing. This is going to be a very long and expensive road, otherwise’ was the conclusion of the £250 an hour Portland paediatrician we had scraped pennies to see, desperate for someone, anyone with medical knowledge to listen and reassure.
He was right. We are still on that road, and will be on it forever. This ‘anxious’ mother’s fear was not misplaced. The last ten years have brought some frightening lows, but many more unexpected highs into our lives too.

I never expected to have a disabled child.
I never expected to have a child who cannot, and may well never, walk or talk.
I never expected to have to resuscitate my child while his body was trapped in a life-threatening seizure.
I never expected to be changing nappies forever.
I never expected to be mashing food and hand feeding my child, maybe for the rest of his life.
I never expected to have a house full of lifts, hoists, medication and wheelchairs.
I never expected to not know why. But despite the very brightest brains in the world trying to figure out the conundrum that is my little boy’s condition, he remains without diagnosis.
I never expected to be able to cope, in this outer realm of parenting. But here I am. Not inspirational. Not amazing. Just present.
With eyes wide open to the complexity, beauty and fragility of human existence than they have ever been.
I do not believe that ‘special children are only given to special parents’, but my outlook now is very different. And this does feel like an unexpected gift I am lucky to have been given.
This unexpected path, hidden in the undergrowth behind shinier, louder, more seemingly popular ways of life, has given me strength.
Strength to up sticks and move the entire family from an upwardly mobile south London life to a simpler more unassuming one in an old stone cottage on the Cornish coast. Finding a new life when our old one no longer fit. And not giving a jot what other people think. It has taught me not to compare. Comparison truly is the thief of joy.
Strength to better understand the needs of others, and to use my own abilities to speak up for inclusion, understanding, equality and care. To challenge policy and provision. To help change the future for the better.
This life has taught me the value of true friendship. Parenting can be lonely and isolating when your child has a disability, your time and emotional availability eaten virtually whole. I have lost friends along the way. But true friends wait for you, even if they don’t always understand your life.
It has taught me that typical milestones are not a measure of fulfilment or happiness in life. That it is important to celebrate small steps and little moments of joy that are all too easily overlooked in a busy world but hold as much value as conventional achievement and ’success’.
I have learned that I am strong and calm in a crisis. But that if I don’t look after myself in the days that follow, or try to bury emotions, there’s a price to pay. Self-care for parents of disabled children is rarely as simple as trotting off the to the spa (hello, childcare?) but instead stopping for a moment to get some fresh air, listen to music, or drink a cup of tea while it’s hot can all help. I’ve taken up sea swimming (along with everyone else!) and it’s like hitting a reset button, every single time.
It has broadened my view of what a ‘good life’ is. On paper, it would be easy for an outsider to think my son, and others with disabilities like his, have a poor quality of life. One that is perhaps not worth living.
But they would be 100% wrong.

Now I know that quality of life cannot be measured by physical and intellectual capability. It cannot be measured by life expectancy. It cannot even be measured by independence, or lack of.
My son is, by far, the happiest soul in the household. He is not troubled by expectation for what life ’should’ be like. He lives in the moment, I wish I could do it as well as he does. He finds life hilarious. His roaring laughter and squeals of excitement are a many-times-daily event.
My son has a good life. A life very much worth living. And celebrating. He has people around him who love him and want the best for him, at home and at school. He brings genuine joy, kindness and belly-laughter to everyone he knows. And he thinks taking selfies is just the BEST.
Mothering my boy is, truly, a privilege.
And after all this, I never expected that it would be my daughter, not my son, who would end up in hospital during a global pandemic. Her mental health trashed by years and years of daily struggles with anxiety, bullying and sensory overload at school that were never taken as seriously as they should have been.
I never expected that she too would find herself occupying the tick-box named ‘special educational needs’, because we now know she is autistic. A late diagnosis. My ‘typical’ baby, not so typical after all.
I never expected to be sending my son off to school during a pandemic but to now be home educating my daughter, perhaps for the extent of her secondary education, while co-running a PR agency, because now I know it’s essential to protect her mental health.
I never expected to be re-learning about the world with a new autism-tinted lens, absorbing everything I can find about neurodiversity and positive autistic culture.
I never expected that when I started to learn about the life experience of autistic women and girls, that I would see myself behind that lens too. It explains so, so much.
My path up the mountain of motherhood has not been the one I thought I would take and the twists and turns just keep on coming.
Luckily, it’s beautiful on this path, and the views are pretty damned fantastic, but there are certainly times when I have needed a guide, a helping hand, refreshment or sometimes even mountain rescue. And if you’re new on this path of raising a child with a disability, know there’s plenty of us already on the mountain ready to extend a hand in your direction.

* If you’d like to read more about Katherine’s story, you can find her blog at passthesaltwater.com

———————————————————————–

HELPFUL RESOURCES:

SWAN UK: www.undiagnosed.org.uk

National Autistic Society: www.autism.org.uk

———————————————————————–

‘But why can’t some people walk?’ is one of the tricky questions I tackle in my debut book BUT WHY? which is available to preorder now and also on audiobook.

———————————————————————–

FANCY SOME MORE?

– Read founder of the Mums Like Us network, Sally Darby’s remarkable list on Life As A Disabled Mother as she writes about finding her way through the already daunting task of parenting.

– Read Penny Wincer’s important list on The Imperfect Art of Being a Carer where she explains how she cared for her mum when she was just a child herself and now she cares for her son who has autism.

HOW MY CHILDREN’S DISABILITIES CHANGED OUR LIVES

Sometimes a list really gets hold of you and this one by Katherine Kowalski, is one of them. It’s an honest, insightful reflection on how her experience of Motherhood has lead to somewhat of a personal metamorphosis.

Though full of challenges it has given her huge strength and opened her eyes wide to the complexities, fragility and beauty of what it is to be human.

———————————————————————–

I stumbled into motherhood. My first baby was a surprise. I never planned for the type of mother I wanted to be, and I hadn’t given any thought to what life would be like if a child of mine was born with a health problem or a disability.

But she blossomed, and life with her was ’normal’. Bugaboo, cappuccino, bone-weary, London park, milky, NCT-style ‘normal’. It seemed that’s what everyone was doing, and I couldn’t imagine my motherhood any other way. Privileged and comfortable was all I had known in my adult life.

It was when the mood of the day switched gear to ‘are you thinking about another one yet?’, that my very normal life changed tracks.

I never imagined having to terminate a pregnancy for medical reasons. Perhaps, in those shoes again, knowing what I know now, I would make a different choice. I’ll never know my second baby, the person they would have become, their abilities, their disabilities.

I never had a chance to say goodbye. My womb, vacuumed dry of fear, a new seed of guilt planted in its place. I had touched the edge of life with disability in it, and recoiled, through nothing more than my own ignorance and fear.

I am not a religious person but maybe I do believe in fate.

So what followed didn’t feel misplaced.

Mother’s instinct, possibly. A full body brace, guard up, listening, watching, waiting for something to happen.

Scrawled in black biro in my maternity notes, the midwife had written ‘mum seems very anxious’, but she did neither reassure nor soothe. A furrowed brow in the corner of the room, long-awaiting the end of her shift.

The post-natal ward paediatrician examined every inch of my baby’s delicate body, with searching intensity in her eyes. I knew why. And so did she. But not a single word was exchanged and she sent us on our way. Discharged. Maybe my fear was a bum-steer? A stale leftover from earlier heartache.

He fed. He slept. Oh he slept! Gloriously alarming, quiet newborn days. A paradox of open relief and secret terror. My family does not have quiet, biddable babies.

But feeding and putting on weight were the only tick-boxes on the list at the baby clinic. Which he was. So nobody ‘professional’ questioned his wellbeing.

Maybe I was imagining what I thought I saw? I was an ‘anxious mum’ after all. My maternity notes, written by a woman who had known me less than two hours, told every health professional such.

There was no dramatic ‘diagnosis day’ for us. With health visitors seemingly uninterested in his condition, ‘He’s feeding and putting on weight isn’t he?’, we floundered.

Privately, we sought help, hoping for reassurance, a leg-up back onto the beaten path of everyday parenthood.

None came.

Instead, a shuddering shift, slipping further down a cliff face we had no idea how to navigate safely. Descending, alone, from the world we knew, into one we didn’t.

‘We’re really worried about what we’re seeing here. Have you heard of dysmorphic features?’ the osteopath quizzed, tentatively, one arm ominously draped around my shoulder.

‘This is the worst case of torticollis I’ve ever seen. Oh, and that eye movement, do you think he might be having little seizures?’ offered up the private children’s physio, after a session that had brought her quietly to tears.

‘I can’t get a reading. We don’t like that,’ the audiologist announced to the ground in front of her.

He was right. We are still on that road, and will be on it forever. This ‘anxious’ mother’s fear was not misplaced. The last ten years have brought some frightening lows, but many more unexpected highs into our lives too.

I never expected to have a disabled child.

I never expected to have a child who cannot, and may well never, walk or talk.

I never expected to have to resuscitate my child while his body was trapped in a life-threatening seizure.

I never expected to be changing nappies forever.

I never expected to be mashing food and hand feeding my child, maybe for the rest of his life.

I never expected to have a house full of lifts, hoists, medication and wheelchairs.

I never expected to not know why. But despite the very brightest brains in the world trying to figure out the conundrum that is my little boy’s condition, he remains without diagnosis.

I never expected to be able to cope, in this outer realm of parenting. But here I am. Not inspirational. Not amazing. Just present.

With eyes wide open to the complexity, beauty and fragility of human existence than they have ever been.

I do not believe that ‘special children are only given to special parents’, but my outlook now is very different. And this does feel like an unexpected gift I am lucky to have been given.

This unexpected path, hidden in the undergrowth behind shinier, louder, more seemingly popular ways of life, has given me strength.

Strength to better understand the needs of others, and to use my own abilities to speak up for inclusion, understanding, equality and care. To challenge policy and provision. To help change the future for the better.

It has taught me that typical milestones are not a measure of fulfilment or happiness in life. That it is important to celebrate small steps and little moments of joy that are all too easily overlooked in a busy world but hold as much value as conventional achievement and ’success’.

It has broadened my view of what a ‘good life’ is. On paper, it would be easy for an outsider to think my son, and others with disabilities like his, have a poor quality of life. One that is perhaps not worth living.

But they would be 100% wrong.

Now I know that quality of life cannot be measured by physical and intellectual capability. It cannot be measured by life expectancy. It cannot even be measured by independence, or lack of.

My son is, by far, the happiest soul in the household. He is not troubled by expectation for what life ’should’ be like. He lives in the moment, I wish I could do it as well as he does. He finds life hilarious. His roaring laughter and squeals of excitement are a many-times-daily event.

My son has a good life. A life very much worth living. And celebrating. He has people around him who love him and want the best for him, at home and at school. He brings genuine joy, kindness and belly-laughter to everyone he knows. And he thinks taking selfies is just the BEST.

Mothering my boy is, truly, a privilege.

I never expected that she too would find herself occupying the tick-box named ‘special educational needs’, because we now know she is autistic. A late diagnosis. My ‘typical’ baby, not so typical after all.

I never expected to be sending my son off to school during a pandemic but to now be home educating my daughter, perhaps for the extent of her secondary education, while co-running a PR agency, because now I know it’s essential to protect her mental health.

I never expected to be re-learning about the world with a new autism-tinted lens, absorbing everything I can find about neurodiversity and positive autistic culture.

I never expected that when I started to learn about the life experience of autistic women and girls, that I would see myself behind that lens too. It explains so, so much.

My path up the mountain of motherhood has not been the one I thought I would take and the twists and turns just keep on coming.

* If you’d like to read more about Katherine’s story, you can find her blog at passthesaltwater.com

———————————————————————–

HELPFUL RESOURCES:

SWAN UK: www.undiagnosed.org.uk

National Autistic Society: www.autism.org.uk

———————————————————————–

** ‘But why can’t some people walk?’ is one of the tricky questions I tackle in my debut book BUT WHY? which is available to preorder now and also on audiobook.**

———————————————————————–

FANCY SOME MORE?

– Read founder of the Mums Like Us network, Sally Darby’s remarkable list on Life As A Disabled Mother as she writes about finding her way through the already daunting task of parenting.

– Read Penny Wincer’s important list on The Imperfect Art of Being a Carer where she explains how she cared for her mum when she was just a child herself and now she cares for her son who has autism.

———————————————————————–

OR HOW ABOUT WRITING A LIST?

Find submission guidelines here. All writers and topics are welcome, but we are currently particularly looking for lists on:

– Internet trolling

– Prison

– Pain killer addiction

– Extremely large families

– Estrangement

– Lottery winners

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‘But why can’t some people walk?’ is one of the tricky questions I tackle in my debut book BUT WHY? which is available to preorder now and also on audiobook.